Sunday, May 3, 2015

Pushing the limits

I think one of the biggest challenges in parenting a medically fragile child is knowing how far to push them. The simple answer is "as far as you can; they'll let you know when you've pushed too far." And, by and large, that is the approach we've taken with Bodie.

But, of course, as with all things in life, it's not quite that simple. At 5, Bodie doesn't have the endurance of his peers. He just doesn't. I think my son is amazing and wonderful and has the endurance to do what he needs to do in life. But I'd be lying if I said he was "just like" all the other kids on the playground at preschool. He's never seen running around with the packs of boys. He's smart, and I think he's realized that he just can't hang with that. He gravitates toward riding trikes, where the differences aren't as noticeable - and to playing in the sand and on the jungle gym.

I've been thinking lately about his endurance. It's not due to low oxygen saturations anymore (his baseline is around 95%, which isn't that different than his peers) - and he's not really ever winded anymore (in that regard, his endurance has improved). It's hard to blame his current heart condition for his lack of endurance, not when I know other post-Fontan HLHSers who can run circles around their peers. I think it may be because he's just never been pushed to develop the endurance. For the first 4 ½ years of his life, his oxygen saturations were 75-85% of his peers. Every ounce of energy his body had was used up to keep his body running. It's only been in the last year that he's had any extra energy for other endeavors. So he's never been asked to build any endurance - we carried him if he asked, we slowed down if he needed it.

So, not only had his physical endurance not been developed, but he has a total mental block now on the physical stuff. He's scared of it. He doesn't THINK he can do it, so he won't even try.

But he's stable. It's time to start working a bit on building that endurance.

It's time to give him the gift of a little more oomph.

It's time to push him a bit.

Not a lot.

I'm not talking asking him to run a marathon.

But I think perhaps he's capable of walking on a mile long family walk instead of being carried. Or keeping up when we're out running errands. Instead of whining that he can't and dragging his feet.

So today, on this beautiful day, I took the kids on a hike. I started with Bodie in his Tula (an absolutely awesome toddler carrier that works GREAT for him (and is MUCH easier on my back than just carrying him!).

But then he wanted down to explore, so I put the Tula away.

And then we saw this.

And decided collectively that we WANTED TO HIKE IT (it's not as far away as it looked - the picture just makes it look that way, I promise!).

I had planned on tula'ing Bodie when he got tired, but when we got closer, his energy was up and I realized he could do it, it wasn't that scary up close, and as long as we took breaks and let him go as slow as he needed, he'd be fine.

You can guess how he responded.

Acted like his legs didn't work.

Like he was totally incapable.

And that was on the flat part before the hill began.

Seriously.

So we took it slowly.

And it was about the first hill in as he's literally thrashing on the ground and screaming that he can't do it and I'm standing over him telling him to "Stop whining. Yes you can, we will take it slowly - you only think you can't" that I see a familiar face coming over the ridge…one of our favorite attendings from CHLA out hiking with his family.

O.M.G.

I'm sure he took one look at us and was like "Seriously!?!? This is why we save these fragile kids, so their parents can force them to do hikes they can't do??? What is she thinking???"

But here's the thing. Bodie CAN do it.

Bodie DID do it.

We ALL did it.

And darn it, if that kid wasn't SO proud of himself for doing it.

And ran most of the way back down, before I gave him a lift back to the car on the Tula.

1 comment:

I have no medically fragile kids and they all, at various stages, flopped on the trail kicking and screaming, insisting they have TIRED LEGS and they ARE DYING. My husband and I just roll our eyes and say, "City kids."

"For you formed my inward parts; You wove me in my mother's womb. I will gave thanks to you for I am fearfully and wonderfully made; Wonderful are your works, And my soul knows it very well."
-Psalm 139:13-14

The first time my heart walked around outside my body

My rock, the wonderful man on this journey with me

Me

I'm currently a happily married stay at home mom to my beautiful children Sierra and Bodie. Our life's a bit challenging at the moment, but we thank God every day for the opportunity to love our children!

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The Chosen Mothers by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy." "Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side." "And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."